Do you have difficulty eating or drinking?

[Dagmar]

I’ll start this discussion by sharing a few of my tips.

Depending on the severity of the symptoms, options for ALS patients can include cutting up and chewing smaller pieces of food, changing the food’s consistency by blending it, or relying on a pre-mixed formula. In my case, I can still chew and swallow normal foods. But I add a powdered thickener to all my liquids. I use the brand: Thick-It. We find it in the pharmacy section of Walmart or now, order it through Amazon. (I wrote a blog post on the topic of swallowing)

A fellow pALS had trouble swallowing normal foods, and had to have everything liquified. Her husband used a Ninja food processer – – he would liquify meals, soups, cereals, and more. They even took it along on a cruise (back when we had cruises!) and the ship’s food staff helped liquify her meals.

[Danielle Uskovic]

Great advice Dagmar!

I have bulbar onset so speech and swallowing have been my major challenges to cope with.

For me:

1. I monitor my daily calorie and protein intake via an app. It’s easy to not meet your nutritional requirements when you have bulbar onset because of the difficulty swallowing.

2. I avoid soft breads, dry breads, anything too slippery in texture, lettuce on its own, some fruit like watermelon.

3. Cutting up food into smaller pieces.

4. Using lots of butter and/or olive oil on my food.

5. Foods like pasta, curries, risotto/rice, stews work the best because they have a lot of sauce to help with swallowing.

 

[Fatimah]

My mother diagnosed with ALS 2 years ago with bulbar type.

She has difficulties whith swallowing. We noticed she lost weight  and lost her appetite as well.
<p style=”text-align: center;”>She can not keep the liquid in her mouth , she adapted now by taking small amount of liquid and eating soft,wet food with sauce.</p>

[Dagmar]

Fatimah – – I can relate to your mother’s swallowing issues. Thin liquids cause me to choke and almost “drown.” I can’t say enough as to how using the Thick-it powder has helped me continue to enjoy beverages (thickened) and not have to worry that the only alternative would be a feeding tube!

I use the brand: Thick-It. We find it in the pharmacy section of Walmart or easily order it through Amazon. (I wrote a blog post on the topic of swallowing).

[Jonathan L Maddock]

Hey, Dagmar….great advice on the Thick-it. I have immediately placed an order through Amazon. Small pills are a pain to swallow without something thicker. Thanks!

I’ve taken to mincing my food up in a mini 3.5 cup food processor. Works like a charm. A few weeks back I was eating “normal” food, and came close to choking. It scared me, and now I’m much more careful about what I’m eating.

I try not to drink out of a bottle anymore, I got tired of spraying the place. I sip from a glass, put my chin down, then swallow.

Jon

[Dagmar]

Jonathan – – good to know my tips helped! Let me know how the Thick-it works for you. It’s a little bit of a learning curve as to how much/little to use in different types of beverages. But once you know the particular amounts – – it’s the same every time.

When pills are to “big” or clunky to swallow, I take a bite of cheese…chew it up…right before swallowing, pop the pill in, swallow… then wash down with a drink (thickened 🙂 ).

Also, when drinking from a glass…try using a straw… it will automatically keep your chin down. Plus, you won’t have to hold/lift the drink up.

https://alsnewstoday.com/2018/10/30/als-underground-last-plastic-straw-alternatives-paper-silicone-stainless-steel-sugar-pasta/

 

[Fatimah]

Thank you Dagmar .

You spread positive energy as usual.

[Elizabeth Benz]

I’m having increasing problems swallowing too.  I have good friends who are speech therapists and said to take the pills with applesauce.  It makes such a difference for now.  At some point they may need to crushed too.

I am using Simply Thick in my liquids.  It comes in powder or liquid.  We have a quart bottle of the liquid with a pump that makes it very easy.  But it is very sticky so if some gets on the cup it needs to be washed.

[Wendy Ferguson]

Hi, thanks for the tips. It’s my daughter who has ALS.. her fvc has gone to 59 and doctors say she has to have a peg.. but she hasn’t lost weight, and can still swallow most things. It’s really upset her as she can’t have her two young children on knee and much higher level of care with peg. What do people think about having peg prior to any nutritional issues.?

[Dagmar]

Wendy – – this is a huge decision that needs discussion and reflection. Certainly, when the pALS can no longer safely swallow food or drink by mouth, it’s time for a PEG (feeding tube). But, the decision to proactively have a PEG to “be prepared” or because the FVC (forced vital capacity of the lungs) is dropping – – and making surgical anesthesia risky – – then discussions begin!

I have made it a priority to keep my FVC high, in order to avoid this forced surgery. (I was offered a PEG in my 2nd year “to be prepared” but I declined. Now 8 years later, I still don’t need one – – and in my case I’m glad I didn’t get it). But everyone has different ALS symptoms and health needs.

Here is a video from our ALS writer, Kristen Neva: https://youtu.be/BHf0N0Bup1Q

Here is my blog about improving FVC: https://alsandwellness.blogspot.com/2020/01/how-blowing-bubbles-helps-me-breathe.html

[Bev]

Hi Dagmar
My speech therapist ordered this device for me to strengthen my lips and tongue. Has anyone tried this yet?

https://www.google.com/url?sa=t&source=web&rct=j&url=https://getabilex.com/&ved=2ahUKEwjNqNaxi6fqAhUQc98KHRMKCM4QFjAAegQIBBAB&usg=AOvVaw1THG-1KuLIU-u5slpYg3tG&cshid=1593437642011

[Dagmar]

Hi Bev – – that is an interesting device… and no, I haven’t tried it yet. But would be interested in hearing from anyone who has.

My reluctance with this type of device is that its goal is to “strengthen the lips and tongue.” Which may be applicable for people with dysphagia from a stroke, injury or surgery. Their motor neurons in the tongue muscle are still intact. In the case of ALS, the motor neurons in our tongues/mouths have died…and the tongue is operating on “2 cylinders instead of 4.” Much like our feet – – with foot drop, we can’t get the strength back in our feet – – only find ways to support them and keep the unaffected leg muscles strong.

So, doing tongue exercise may not be beneficial. Maybe it would in early, early stages.

However, for me, awareness of my neck/chin position when swallowing, adjusting the amount and type of food helps. Also, adjusting my speech and how I pronounce words (https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html ) all help.

Again, I look forward to you sharing with us what you think, after using the device for a while.

[Jonathan L Maddock]

Dagmar, the Thick-it works like a charm. Easy-peasy. It really helps with swallowing small pills, and when I’m especially tired in the evening.

And as a side note, to get more calories I’ve been adding instant milk to the Special K protein drinks I buy and sending it through the blender. I’m on a 3000 calorie per day quest.

Jon

 

 

[Dagmar]

Great news Jonathan!

[Walter]

Hello: My diagnosis has not been confirmed yet, but my neurologist said he was sure I have ALS. I need one more test called the Nerve Test to confirm it. My symptoms started about 2 years ago with difficulty swallowing and slurred speech. I delayed going to a doctor thinking it was acid reflux possibly and would get better. I also had gradual weakness in my legs and loss of weight. I pureed my food for a long time and did okay for awhile, but about 6 months ago I had trouble even swallowing pureed food without choking and aspiration and totally lost the ability to speak in a way that anyone could understand. I had to write everything down to communicate. In March of this year I had surgery to put a peg feeding tube in my stomach. In 2 years I lost 60 pounds. I went from a weight of 170 down 110 pounds. Since insertion of the peg tube I have gained a few pounds to 113, but I am still very weak especially in my legs and arms and have developed breathing problems due to a lot of mucus in my lungs and throat and inabilty to cough it up very well. I am unmarried and live alone. I continue to live in my rural home and be independent for now, but not sure how long. I recently got a rollator walker which helps me get around much better.

[Dagmar]

Hello Walter, I am sorry that you are experiencing so many challenges and not yet having a diagnosis. But, yes, everything you describe sure sounds a lot like ALS.

Have you read this recent topic post about a program at John Hopkins Medicine to help people in the recovery from COVID-19? The program is actually good for anyone, virus or no-virus… especially to help those with breathing issues.

Here is the link to the topic… the link to the PDF of the program is on the same page.

[Dagmar]

Hello Walter, I am sorry that you are experiencing so many challenges and not yet having a diagnosis. But, yes, everything you describe sure sounds a lot like ALS.

Have you read this recent topic post about a program at John Hopkins Medicine to help people in the recovery from COVID-19? The program is actually good for anyone, virus or no-virus… especially to help those with breathing issues.

Here is the link to the topic… the link to the PDF of the program is on the same page.

[Walter]

Thank you Dagmar. I will check into the link you provided.

[Elizabeth Benz]

Walter, I too am sorry to read about your situation.  I don’t know where you live but I hope you can contact your local ALS Association chapter.  They  have been incredibly helpful to me , esp. with equipment from their loan closet.  Best of luck – God bless you.

[Walter]

Thank you Elizabeth. I live in West Central Illinois near Quincy.

[Deleted User]

Walter,

Do you have a cough assist machine?  If not, ask the ALS Association for one.  It should help.  There is also a suctioning device available.  They say drink lots of fluids to keep saliva and/or mucus thinned.  There is also Mucinex which the ALS Association perhaps help you obtain.  I wish you the best!

[Deleted User]

Walter,

Do you have a cough assist machine?  If not, ask the ALS Association for one.  It should help.  There is also a suctioning device available.  They say drink lots of fluids to keep saliva and/or mucus thinned.  There is also Mucinex which the ALS Association perhaps help you obtain.  I wish you the best!

[Walter]

Thank you Walter for the information. No, I don’t have a cough assist machine. I have heard of Mucinex, but have not tried it. I will try to add more water to my feeding tube. I add some water before and after each feeding to flush the feeding tube. Thank you.

[Elizabeth Benz]

I have a cough assist machine and also a suctioning device.  I esp appreciate the suctioning because I get mucous up to a certain spot but can’t cough it out and it feels like it blocks my airway.  So I feel better being able to go in and try to suction it out.  It’s messy and not as effective when I do it to myself.  But then again I can feel where it seems to be.

Good luck!